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Data collection and costs

Measuring quality of life or - more generally - presenting questionnaires to patients are examples of collections of data. Like most data collections they cause costs and should only be done, if:

  • a (research) question is given, and
  • the required resources are available.

Regarding the possible benefit that arises out of measurement of quality-of-life-data or outcome-data, I suggest you to read the corresponding parts of my thesis and other published material.

Costs of data-collection

Costs for staff salaries and infrastructure have to be taken into account as major contributor to overall costs of quality-of-life measurement. However, they are highly variable, depending on the design of individual applications or studies. Therefore, general information cannot be given here.

In my thesis, you can find an example showing the effort to be expected for routine collection of quality of life in all out-patients of the Medizinische Klinik of the University of Ulm.

Questionnaire license fees

Please note that for the use of some questionnaires fees have to be paid to the copyright owner (e.g. EORTC QLQ-C30), depending on the intended usage.

Costs of the QL-Recorder - AnyQuest for Windows

AnyQuest for Windows is a software solution that is not dependent on any specific hardware. It only needs a quite arbitrary PC running Microsoft Windows (For experts: you may also use Windows-emulations like IBMs OS/2, Insignia SoftWindows for Apple, Wine under Linux - however I do not have much practical experience with these.)

The software supports a great variety of different input devices like mouse, track-pad, touch-screen, pen-computer or "Tablet PCs" (laptop size computers with pen input) or digitizing tablet..., different screens (concerning colours and resolution), sound-output (talking questionnaire), printer and fax devices, networks...

If you already use a PC with mouse, no additional costs for hardware need incur. A solution in which an existing screen is upgraded to a touch-screen using an add-on device can be acquired for about EURO 250.-. Probably any so called "Tablet PC" with a price range from about EURO 800,- up to EURO 3.000,- should work. If you're on a budget, you may search eBay for used pen-computers or Tablet PCs, e.g. from the Fujitsu Stylistic series that has included numerous individual models over the last 8 years or the Palmax PD-1000 or PD-1100, a small sub-notebook with touch-screen and very well readable TFT-display.

Basic differences to AnyQuest for MS-DOS are:

  • Use of a Windows-desktop,
  • interactive presentation of questionnaires,
  • much easier possibilities to transfer existing questionnaires onto the electronic system,
  • easier handling of functions to export data into other software.

The open, structured and universal file format which is used to save collected data was preserved and extended.

Because I want this software to develop into a standard solution in quality of life measurement and as in contrast to the above solution neither tablets nor printed templates are required, I can offer a free evaluation license and a cheap licensed and personalized version:

  • Free for users who explain that they do not have sufficient funding (e.g. students for their thesis).
  • USD 150,- or EURO 150.- (plus VAT, according to legal regulations, depending on country and buyer) for users who do not fit any of the other categories.
  • For users who receive public or private funding individual terms have to be negotiated.

Please read the currently applicable license conditions you find in the help-file of the version you're using.

Costs of the QL-Recorder - AnyQuest for MS-DOS

This system requires any kind of PC, a digitizing tablet, software, and a tablet template per unit.

For lay-persons: You can take a PC out of your collection of old devices as well as a futuristic multimedia computer.
For experts: The setting works with a 80286-based computer with floppy-drive, monochrome-monitor and MS-DOS 3.x.

The recommended digitizing tablet is either a Numonics Gridmaster tablet or a Calcomp Drawing Slate tablet with stylus, each with 18" x 12" measuring area. Both tablets work very well due to their design: they are as flat as a writing pad and patients do not associate them so much with computers as digitizers from other distributors which may be several centimetres thick. The superior design however has its price: While simple devices of the same size are available for about EURO 250.- both tablets mentioned above cost about EURO 750.-. The Calcomp tablet uses a wireless stylus but it needs a mains power supply. The Numonics tablet has a cable-bound stylus but can be used without mains power supply.

Depending on the used questionnaire and your patients' visual function you can also use tablets that are smaller than 18" x 12" and cheaper.

A package consisting of one of the both digitizers, tablet template, the required software GraTaSim, AnyQuest for Windows and matching definition-files including comprehensive manuals can be acquired from myself. It costs EURO 1,250.- plus tax and shipping costs (depending upon availability of hardware).

If you want to transfer your own questionnaires onto this system you have to draw and print a tablet template at first. Afterwards the answer fields are digitized on the tablet template. Therefore I've written a program that is handled similar to a drawing- or CAD-program and renders the generation and editing of template definition files rather comfortable. It is available for EURO 500.- plus tax and shipping costs from myself.

The software can be used within a network.

AnyQuest for Java

This programm displays questionnaire definition files designed with AnyQuest for Windows under Java. Thus, they become available within WWW-Sites as well as within arbitrary computers (from Pocket-PCs or Palm-OS Handhelds up to Supercomputers), which have a Java runtime environment.

This version is in an early state of development, but if a sponsor is interested, it can presumably be completed within short time, as especially demanding components like the questionnaire editor and the DOS/Windows specific communication need not be implemented here.

Other services

Upon individual agreement and against compensation of expenses, I may be able to show you several available systems, report on my own experiences with QL-measurement, discuss your actual research questions or train your staff.

I can individually prepare integrated packages for you that may contain information booklets, specifically designed electronic questionnaires presenting with company- or institution-specific logos upon request.

I can also assist in designing outcome measurement projects or when you wish to integrate outcome measurement into your site-specific clinical routine.

Other users, third party hard- and software sources and support

You can contact companies and institutes or other users listed on the next pages.

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